Any Drs or Nurses out there? End of life care.

[ladybird69]

Can I have some advice please. My Mum is very poorly in a nursing home. I was told on Saturday that her body was shutting down and then the nurse told me today that the Dr is going to put together an end of life plan tomorrow. I asked her what it meant but she said I can’t say until I hear exactly what he plans. Does this mean that death is imminent or will it be a long process? I’ve also been told that I can go in and see her now despite the strict guidelines in place at the care home.

Sorry to hear this.
From my limited experience, it does sound like death is imminent, it sounds like the care plan will be to manage any pain and keep her as comfortable as possible.
Drs & Nurses know the signs of end of life and can see the process happening.

Take care x

Thank you @ShirazSavedMySanity. I need to get someone to help out with my cats then so that I can spend time with my mum. This doesn’t feel real ☹️ X

Sorry to hear this OP

I am not a Dr or nurse but I do have some professional involvement in EOL care

Yes, I would imagine they have recognised signs which suggest your Mum is approaching EOL in coming days or possibly weeks (it's unlikely they will be able to give an exact time line)

The Dr will probably prescribe anticipatory medication (morphine etc) which can be used for symptom management if your Mum is in any pain or distress

So sorry for what you're going through. You could maybe call the home in the morning and find out roughly when the dr is fur to arrive and meet the dr there or if they don't know find out which surgery they are coming from and call the reception for advice. If you can't be there I'd definitely get a message to the dr either via the care home or the surgery that you'd like a call to discuss the plans, you know your mum better than they do so can help them make a plan advocating her wishes.
It sounds like you've got a rough few days, hope you've got some support x

When my mum was placed on EOL care she lasted nearly 2weeks.
It was really difficult but we all got to be with her and she passed away peacefully. I stayed with her for the last week she was also in a nursing home.
Take Care of yourself.

@EhUp my mum is already on 3 types of morphine and another painkiller so thankfully she is out of the excruciating pain that she has been in. @ChasingARainbow ive just phoned the home to see how mum is tonight and the nurse told me when the dr is visiting so I can be there with mum to see him. She said today that she just wants to die alone ☹️

@ParkheadParadise. Thank you, the home has said I can stay as long as I want with her. So I’ll try and stay as long as possible with her. X

Not a Dr/Nurse but my Grandma was given EOL care in a care home just prior to Covid kicking off - this may be different for you but might give some indications.

The whole protocol changed once EOL care was in place, where they no longer tried to actively force her to eat, drink etc but instead wet her lips or drink/eat if she wanted.

They checked on her every 15 minutes and completed paperwork to monitor any changes. They also had medication prescribed and on standby if she needed it to help make her comfortable and alleviate any pain as needed.

They also had quite a long and in depth chat with us about her and our wishes. She had a DNR given with our blessing, we got a funeral director on standby with all details passed over in advance. We went through what would happen when she passed away and how we would deal with belongings etc. They also talked through a ‘yellow ribbon’ programme where they put a yellow ribbon on the door of the resident that has passed away for staff and residents to be mindful for us, we also got to choose a keepsake from a box which was kept on her bed in her final days, which we were able to keep.

We were kept informed all along and had calls at least 2x a day to update how she was (we lived quite far away). All in all this in particular really helped when she did pass away, as we were just able to focus on grieving.

All in all it was just over a week that she was on EOL, and she passed away peacefully, without pain on January 8th.

I hope the next few days are calm and hopes her transition is peaceful. You’re in my thoughts OP x

I'm sorry to hear about your mum.
The problem as somebody else said is that the timescale can be unpredictable.
Medication wise painrelief, anti-nausea and stuff to prevent agitation if that becomes a problem.
In a lot cases they will put a catheter in.
The staff should give you up to date medical advice, and ask anything you need

Im a nurse. EOL care package means certain drugs will be prescribed to make her comfortable. There will be no therapeutic drugs given to her. No invasive proceedures will be done. In some trusts that means they dont do observations (blood pressure, temps etc) anymore but in other trusts they carry on with that. If shes awake enough, food/water will be offered but if she doesnt want to eat thats ok. If shes too sleepy her mouth and lips will be kept moist. Basically everything is for her comfort. Ive known people on EOL care packages to last a few weeks and some days. You cant really predict that side of things.

I'm a nurse. Although in a hospital not a nursing home so can't directly comment on how it works in a community setting. But for us: it involves analgesia and antiemetics being prescribed, depending on the patient and how they are it may also involve medication to limit respiratory secretions. These are administered via injection using a butterfly needle just under the skin, some people will just require an amount as an when required, others will have a syringe driver which is a pump that delivers a continuous amount of medication. If they are alert and want to eat & drink they do, if they don't want to then we don't provide IV fluids etc. We just moisten their lips with water and use a gel on their tongue to stop it getting dry and uncomfortable. We stop doing clinical observations (blood pressure etc.) So that they can rest without us messing about with them. There is no time scale unfortunately, some patients will last hours others weeks. It's entirely patient dependant and will also be affected by what their underlying health conditions are.

I'm very sorry for the difficult time you're having. X

Thank you for all your help. I’ve had a long talk with the nurses today and also her Dr rang me and explained a lot for me and also told me to call if I need anything. It’s such a shock as she was quite well 2 weeks ago and has deteriorated rapidly. The dr has prescribed the medication that she might need so the nurses have it on site ready when needed and he has arranged for the district nurses to go in and give extra care. She’s still not eating or drinking just a spoonful of ice cream but she’s quite alert today! I’m not ready to lose my mum. ☹️ Thank you for your kind words x

@ladybird69 I'm so sorry to hear this ladybird. My mum is deteriorating but not near end of life just yet, maybe a year or two but even with that timescale I know no one is ever ready to lose our mums.

Big hugs to you & family

Thank you @NoSquirrels and sorry to hear about your mum @arewethere. We love our daily chat and gossip who am I going to laugh and gossip with now ☹️ X

Hi just to let you kind people know that my mum passed away last week, although it was expected the actual speed of it was a shock. The nurse at the care home was actually on the phone with the district nurses requesting a driver for her meds at the time! I was with her which was hard going for me but I hope that she knew I was there. I still can’t believe it is real.🌷

I'm so sorry for your loss, and I'm sure that she knew you were there, and felt safe and cared for. She was there when you came into the world, and you were there for her as she left it. Please take good care of yourself- although you were with her, it can take a while to really sink in. Some days will be better than others, and try not to second guess how you are grieving - sometimes it's helpful to accept that this is the way you feel at this particular moment -- try not to think I should,or I ought to be feeling like X,y, or z now.

Thanks for coming to update us - I will be thinking of you and your family 💐

I’m so sorry.
It was good that you were able to be with her, comforting for her & for you too in the time to come, better than wondering how it was for her & feeling guilty at not being with her.
Thinking of you x

Sending love, ladybird. It doesn’t matter at all if you know it’s inevitable, it’s still very shocking.
I’m sure you were a huge comfort to your mum. Let others be a comfort to you now. I’m so sorry for your loss, truly.

There is a lovely thread on the Bereavement board for those who have lost parents, which you might find helpful. It actually doesn’t feel very real at all, you are right. But all feelings - even the absence, the denial - are valid.

Thanks @NoSquirrels I’ll take a look and thank you all for your kind thoughts. I went to see the funeral directors today, they were lovely and so helpful but I couldn’t believe it when I came outside and someone had smashed into my car and took the wing mirror right off! The driver didn’t stop didn’t leave any details. Just what I need right now. Bastards.

sending condolences, @ladybird69. There is nothing quite like the loss of your mother. So glad you got to be with her at the end - in time, that will feel like a real blessing.